Joel is 14! And he just keeps growing - 5 feet, 10.5 inches now! He had friends over Saturday afternoon to play video games. They were loud, but it actually wasn't as scary for the rest of us as it sounds. We locked them in the basement and threw food at them. They were happy and left us alone. Sunday, Joel's actual birthday, he chilled in his pjs all day until we went to dinner with family to celebrate him.
Monday, Eric and I went to clinic for his check up and platelet transfusion. He had a little nose bleed while we were waiting for his platelets. Since it wasn't bad at all and stopped fairly quickly, I assumed he must have some platelets. His Nurse Practitioner came in and said oh another of Eric's regular nosebleeds and I said no, this isn't normal, it isn't bad at all! She also confirmed that Eric's platelets were less than 5, so it is quite surprising, and lucky, that his nose bleed wasn't bad. She was very excited about the results of Eric's PFT. His lung function is up to 99%! His last test was quite awhile ago and was 90%. This is amazing after his pulmonary GVHD had him down below 50% with a chronic cough. He was treated for this with high dose IV steroids back in the summer of 2023, but we weren't seeing any improvement. Then, out of nowhere, it started getting better in the fall of 2023.
Tuesday Eric was feeling too tired to go to school. Wednesday he went to school, but I got a call at 11:10 because his head was hurting a bit. Thursday he was feeling a bit nauseous in the morning, so didn't go to school. All in, he was at school for less than 2.5 hours all week.
Friday we headed back to clinic for another platelet transfusion. It was a pretty long and frustrating day. Transfusion Medicine still won't send the platelets without a platelet count and even though the bloodwork was sent to the lab STAT, it took them almost 2 hours to return the platelet count. We had been there 3 hours, just waiting, before the platelets showed up. They run for an hour, then a flush and de-access. We left the hospital a little after 2pm, 4 hours after the appointment time, only to find there was an accident on the highway.
Eric's Oncologist stopped by during the appointment for an exam and to chat with us. Eric had only one question for him, that was more of a shouted statement - TOE! He gave me the go ahead to reach out to a podiatrist, so thank you for the recommendations Megan and Emma; we will give Coquitlam Podiatry a call on Monday. He also had the results of the bloodwork last week that was looking for the NUP 98 rearrangement. These are the dysplastic/abnormal cells that mark Eric's disease. They are 71% in his peripheral blood, which is the same as they were in his marrow at his last bone marrow biopsy just before Christmas. This is an improvement from the 80+% that it was before this treatment, though obviously not enough of an improvement. The doctor said in the trials it took 3-6 months, but also mentioned that he was thinking about next steps. For now, we keep doing what we are doing. Eric is "well" even if he's completely dependent on platelet transfusions and losing his tolerance for spending as much time at the hospital as we do.
Now for the good news! We were given tickets to Collectopia, a trading card event. There were other cards, but it was primarily Pokémon. Eric was so excited that he had trouble sleeping Friday night! Saturday morning he had his backpack packed with his binders (to trade) and his wallet (to buy) and we picked up his friend Misa, who is also a huge Pokémon fan, and headed downtown. Starlight Children's Foundation had a table there and they took our coats for us and gave us lunch and the kids a stuffy. Starlight is the best! The kids were mostly interested in the vendors so we spent most of our time in there buying and trading cards. Not me for the buying and trading; my job was to hold things and stand by patiently. While in the room with the vendors, Eric saw Deep Pocket Monster. Apparently he is a famous YouTuber (Pokétuber.) They got cards signed and I took their picture with him. We also checked out the museum where we saw Pokémon cards under glass that were worth millions of dollars, as well as the original art work for the Black Lotus Magic card that is worth $20 million!!! In the museum, I took their picture with an Arceus statue. I didn't know who it was which is apparently quite embarrassing since he's the god of Pokémon.
Eric said it was the best day ever and he'd go back today if he wasn't broke! He spent all of his Christmas money, but is very pleased with the cards he added to his collection.
We're back at clinic Wednesday and we should get the results of split chimerism then.
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